Saturday, April 23, 2011

Another Prayer Request for Ellie

Let me start by saying, thank you for all of the pediatric recommendations! Your experiences are definitely helpful to us as we pick a doctor! You guys are awesome!!

First an update on the babies:

Caleb- 5lbs. 6 oz.
Abby 5lbs. 3 ½ oz.
Elijah- 5lbs. ½ oz.
Ellie- 3 lbs. 11 ½ oz.

The babies are continuing to work on their nursing skills. Abby finally started to get the hang of it on Wednesday. All of the sudden it seemed like a little light bulb went off in her head and she figured out what she was supposed to do. After trying for a week and half, she finally nursed for about 5 minutes before falling asleep out of sheer exhaustion. Then she sealed the deal with a burp! It was a victory moment! She hasn’t nursed every time we’ve tried since then, but I know she can do it now!

Ellie started learning how to nurse on Thursday as well. It is really bizarre trying to nurse a 3 ½ pound baby. She’s so incredibly little still! Ellie and both boys are still trying to decide how they feel about nursing which is just fine. I’m good with letting them learn at their own pace.

Ellie also moved to a crib on Wednesday! We now have four babies in cribs and four babies learning how to nurse. Wow!

Caleb and Elijah are pretty much the same with the only exception being that Caleb has been put back on his nasal cannula (he’s come off of it and been put back on twice this week). He was just having too many episodes of dsats and bradycardia and they needed oxygen that they can turn up when he starts turning blue. He will get another chance at being off of his nasal cannula in a few days.

All four babies had PH tests this week because they just seemed very uncomfortable. Poor little guys are suffering from some acid reflux (which is different than normal baby reflux). Caleb has 8% acid reflux and is now on an antacid, and Abby has 16% acid reflux so she is on an antacid and carofate, an additional medication, to help heal her esophagus, Eli has 14% acid reflux and is on an antacid and carofate, and we are still waiting on Ellie’s results. Her little testing monitor that tracks the acid showed that she will test positive for it though. Hopefully we can get her started on some meds to help with that soon! We are hoping that once the meds start helping everyone, it will help them nurse better.

To help with their acid reflux, they have been switched from Neosure formula to Neocate formula. Neocate is a more processed formula that doesn’t have cow’s milk in it. The doctors think that the protein in cow’s milk is contributing to their acid reflux, so they are hoping that switching the formula will help. They also called the dietician in to talk to me about taking dairy out of my diet. Breast milk can have cow’s milk protein in it if the mother is eating dairy which can also contribute to the acid reflux. They’ve told me that eliminating or drastically reducing the dairy I consume is completely optional because there is nothing to guarantee that it will help the babies. The nurses also told me that they haven’t seen it work in the past when other moms have tried it. Actually, the doctor who spoke to me about it told me that they had a discussion whether or not to talk to me about my dairy as they figure I’ve already got enough stress in my life as it is. They finally decided that I ought to know all the options. It will take 3-4 weeks for the dairy to work its way out of my system if I completely eliminate it, and it’s possible the medication will work just fine for the babies. We should know over the next few days whether the meds are helping. Since eliminating dairy and all traces of it means everything from ice cream, to lunchmeat, to bread, I’m thinking I will just stop drinking/eating the obvious dairy items and then take more drastic measures if necessary. I think that’s the best option. I only have so much energy (which is soon to be even more taxed when the babies come home) and I hate to immediately start spending it all on reading food labels. So we would appreciate prayers that the meds work…for all of us.

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So here is how these blogs posts work: I normally start a blog post and work on it over the course of a day or two when I have a minute. The main problem with this is that stuff changes so FAST that I end up rewriting portions of it-sometimes multiple times-before actually getting it up on the blog. So everything written above was started on Thursday evening and updated today before I posted it. The stuff below is *new* information that I learned this morning while I was at the hospital. Some details have been left out because we aren’t the only family involved, but the general details are here.

This morning, when I was visiting the babies and working with them on their nursing, the staff kept asking me if Sean was coming in. Sean had to work today so I was flying solo. Finally they told me to head back over to the NICU that the babies were originally in because one of the doctors needed to talk to me. I walked over and the doctor and charge nurse sat me down in the conference room to share some information about Ellie. Sean and I went back and forth about posting this up here on the blog because of the nature of the issue, but several people in this scenario really need prayer, so here it is:

There was a mix up with the breast milk on Thursday night and Ellie got one feeding of milk that another mother in the NICU brought in for her baby. The milk was fresh, meaning it was unpasteurized and not monitored for anything since the other mom brought it in directly for her baby just like I do for our kids. They didn’t catch the mix up until yesterday morning when the day nurse came on and was double checking everything. Normally, this wouldn’t be a huge issue, but the other mother has some diseases that she is dealing with. The doctor told me several times that most of these are not transferable through breast milk. However, Ellie now needs to be tested for HIV immediately and then again in six months because that is how long it takes for someone to test HIV positive. There is a very small chance that she was exposed to it (the other mother doesn’t believe she has it), but there is a chance nonetheless. I haven’t spoken to the other mom, but the doctor did tell me that she was not responsible for the fact that she was exposed and that she was exposed in what should have been a safe situation for her. Based on the information that they have, the doctor said that the chances of Ellie having HIV or other long-term health consequences are practically zero, but it is still a cause for great concern for me and Sean.

Please keep our daughter, Ellie, in your prayers. I know so many of you have been praying her through her other health issues, but this is very scary. Please, please be praying that all HIV testing comes back negative for her.

Please pray for this sweet other mother who never asked for any of this. She has really come up with the short end of the stick in her situation. The doctors said that she is “devastated” that Ellie has been innocently exposed just as she herself was. My heart definitely goes out to her, and I just wish I could give her a hug. Please also pray for her baby as well.

Thank you.

--Posted by Becca

12 comments:

  1. Praying for you all, most especially little Ellie.

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  2. Sharri Adkins ZahnterApril 23, 2011 at 5:22 PM

    You have so many prayers coming your way from everyone I know & Ellie will get extra prayers at Easter services. I would like to offer you a glimmer of hope. I had thyroid cancer & was on full life support. This did a lot of damage to my esophagus & they put me on Karafate! Its a miracle drug for the reflux & I am sure all four babies. God Bless U All! Happy Easter! Hugz! Sharri

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  3. We will definatelt keep you all in our prayers. When my adopted daughter was a baby she had an "inconclusive" HIV test.. A more detialed test eventually came back clean. I know fiirst hand how frightening it is to hear your baby's name and that illness in the same sentance. Will be praying all is well, and for peace while you wait.

    ReplyDelete
  4. I googled "breastmilk bank" and came up with this:
    http://www.nationalmilkbank.org/ (there are others)
    They collect breastmilk from screened donors for preemies. Maybe that would help?

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  5. Dear Rebecca and Sean,

    definitely praying for you and for dear little Ellie and the other mom!

    ReplyDelete
  6. I can relate to acid reflux myself. It is not fun and I am not a new born so my heart goes out to all the babies.

    I think you do a super job posting all of this in such detail.

    I was devastated when I read about the mishap with Ellie.
    I am so sad and shaken but I will be praying for her that her tests are negative and also for the mother who innocently
    is in this position.

    Sweet peace as tomorrow we celebrate our Risen Lord.

    LOVE TO ALL.

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  7. Prayers from AZ are with you this Easter season! I prefer to believe that God is with you and this HIV thing is only a momentary cross you will bear. Let us all continue to pray for the safety or little Ellie and the continued good health of Caleb, Abby and Elijah!

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  8. I too will pray as Sissy is in the above comment, and so many other countless people all over the world are for your sweet babies and all the issues that they face. I'm especially praying for Sean and you, my sweet girl, that you would lean on the One who loves and cares for you so. He knows your every need and will carry you through all of this.
    Love you!!!

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  9. Am sending my prayers to everyone involved. You are amazing to be so understanding toward the other mother. Your grace is inspiring. Your children are going to be incredible citizens of this world, thanks to all, and how, you will teach them.

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  10. Bless you for asking for prayers for the other mom. Whether the infection was through any fault of her own, she needs to be lifted up and loved on. Thank you for showing Christ by loving her, too. Praying for all your babies!

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  11. catherine mooreheadApril 25, 2011 at 7:53 AM

    I pray for you every morning and am so thankful for your sweet updates. My heart goes out to you as you face yet another challenge--your "momma faith" is growing, isn't it?! Love and hugs to you and your precious little ones.

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  12. I know with all the prayers that are going up for you and those sweet little babies all will be fine. You two always stand so strong and i know if it was me, I could not stop the tears. God is in control you and the babies are going to be just fine. We will continue to pray without ceasing!

    On another note: Ask the doctors if there it anything else you should be looking out for that you eat on a regular basis. ie when Ruby was a little one she kept having episodes of colic. She cried without stopping on a ride back from St. Lou and i was eating tootsie rolls like crazy! At that point i realized she didn't cry with different choc. So I cut the tootsies and the colic disappeared. Something to think about anyway. Love you 6 like crazy!
    PRAY PRAY PRAY PRAY PRAY PRAY PRAY PRAY

    ReplyDelete

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